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Jenny's whole brain radiation

My scan showed many lesions scattered throughout my brain, including some sizable ones. While I was in the ER, they called in both a radiation oncologist affiliated with the hospital and my oncologist. After looking at my scans, both urged whole brain radiation (WBR), given the spread and multitude of the lesions. The radiation oncologist basically said that if we treated each lesion with Gamma-Knife, I wouldn't have much brain left.

I was given a choice but only WBR was recommended at this point. Both my oncologist and the radiation oncologist explained why. The basic argument, which in retrospect could have been given in much scarier terms, was that the cancer was too widespread to make stereotactic radiosurgery an option at that point. The radiation oncologist wanted to reserve it to take care of the larger tumors if needed or for a more localized recurrence. Both doctors held out hope that the mets could be managed.

After about five treatments or so of WBR, I had a seizure and ended up incoherent in ICU for a few days before 'waking up' and then spending a few more days in a regular room. I remember nothing after about day 3 of WBR until a couple of days after I was in a regular room.

I don't think I understood how serious my condition was at that first ER trip and hospital stay. Admitted on Friday evening, they kept me until Sunday afternoon so I could have treatment on this first weekend. Then they sent me home. That first Saturday, they made my mask and gave me treatment #1. It went really quickly. The biggest thing I noticed was the ozone smell that came with the treatment. I did get car sick on the way home each day. After my seizure and release from the hospital, I didn't have that problem. I'd come in, have radiation and go home. I never burned or threw up.

The process was quite do-able. I didn't like it, but by this time I had begun to realize how serious my condition was. I did worry a lot about potential long-term side effects. I did lose almost all my hair, and my scalp got quite dry. I also got an irritation in my eyes that needed drops for treatment. All the other side effects I'm not sure where they came from - probably a combo of factors. The tumors, seizure and several day hospital stay contributed as well. My energy is not what it used to be, but significantly more than it was. I have enough energy now to be able to function as a pastor, as long as I pace myself, and to take care of my kids. I don't clean, and I cook with help. Likewise I've had significant balance issues and dexterity issues. They also are to the point now where they rarely bother me.

This whole crisis prompted my onc to revisit my entire treatment plan. I didn't have any treatment until this settled down. I was currently on Zometa, Lupron and Herceptin (every 3 week dose); hoping to add an aromatase inhibitor when my estradiol levels fell enough. He ordered CT scans to check for progression, consulted docs at Indiana U, and even spoke at length with the Tykerb drug rep. When my CT scans came back improved from February (everything gone or shrinking), and when I dropped the chemo, the consensus was that we save Tykerb for later. I'm still on my previous treatment. Part of that is due to the fact that my first brain MRI after WBR was finished showed a significant improvement, with every tumor gone or shrinking. They expect and hope the radiation to continue to work for some time to come.

I have no memory of much of the couple of weeks surrounding the seizure. Sometimes I have snippets. Some I've recreated on the basis of the stories of other people. That is frustrating. I still have some memory issues; in the long term there are memories I have trouble accessing; once I do, I can usually keep them. I can't multi-task as well, so if I'm only half-paying attention, I can have short-term memory issues. And when I'm tired, I often revert to where I was a couple of weeks or days ago. I also don't feel as sharp as I used to. However, I am still recovering and still seeing improvements weekly, so I'm not willing to say I won't get anything else back. Bit by bit, celebrating the small victories.

The WBR has worked well for me. The radiation oncologist, after seeing my MRI, said, "I have good news. Everything is either shrinking or gone." And, "See you in 3 months."